What do I ask the surgeons about a possible reversal?

Hi Guys:

I made an appointment for the second week of January to talk to the doctors about a possible reversal. I posted recently about my story. I'm the one that asked for successful reversal stories after a number of years. Just a short recap, I'm disabled and I use a wheelchair, but I can walk some. In September, I had an emergency ostomy because I lost my colon due to C. diff and I had E. coli as well. My rectum wasn't touched and I didn't have any bowel issues before that except the suspicion of inflammation because I had intermittent lower left side pain. They're telling me I will go a maximum of six times a day with full control after the reversal is done. But I never really had a chance to talk to them, and as I explained before, I didn't even know I had an ileostomy and not a colostomy until well after I left the hospital because no education was given. What do I ask them at the appointment about the surgery? I mean, my mind is full of questions, but I was wondering if you guys can help pinpoint some important things that I should ask. Also, I have several friends telling me that I shouldn't be on here on this forum because they think it's causing me stress and they say that I'm not gonna know what to expect until it happens because my story will be unique. But I feel like I've read some things on here that say that the doctors didn't prepare people for the reversal and I feel like I need to be on here to figure out information. I guess what I'm asking is, is there anything you guys wish you asked the surgeon before an ileostomy reversal? I also saw some comments about increased cancer risk after reversal, and I don't understand why that would be. I'm concerned about that. And then this thing about inflammation, I think it's called pouchitis after the procedure, and I just wanna know about that. I don't understand much about that. What it is, why it happens? Other than that, I don't know what else to ask. I'm editing this to add something else I know that I wanna ask them and I want to check in with you guys too. I believe on another forum I read that some guy said the stapling is a bad idea with reversal because it can cause narrowing and then it makes it harder for the stuff to come out and that the surgeons do it because they're hasty with their time or something. That it takes more time to sew the closure, but that the sewing is better. Does anybody have any opinions on this? Stapling versus no stapling?

You'll need to know what type of ileostomy you had to determine if it can be reversed. Loop ileostomies can often be reversed. That's a good place to start. Ask how your life will be impacted with a reversal: diet, bowel movements, restrictions, etc. Good luck!

I think it's an end ileostomy. I know it's not a loop one. I just know this from pictures online. Thank you for the advice. They said it can be directly connected to the bottom region because they didn't touch that area.

Ask the surgeon and hospital about post-surgical infection rates.

Think about your quality of life now and the quality of life after a successful reversal, where you're on the toilet 6 times a day. The surgeon/doctor might have said 6 times a day, but they really don't know for sure. It is a gamble. You should have an opportunity to ask them questions, ask how previous patients ended up.

Good luck

Before this, it was maybe once a day, and after with the bag, I'm in the bathroom 10 to 12 times a day.

Hi JVM, I've had an ileo for 30 some years and what works for me to thicken output is foods like bananas, applesauce, peanut butter, potatoes, but I also take a generic Imodium after breakfast and another after supper, and that slows down the output. There's another website called uoaa.org that might be helpful for the area you live to help you find more info and maybe a local ostomy group.

Hi JVM, one suggestion I have is to get a pen and paper. List the questions you have. You wrote them out on the forum. Find out exactly the type of ileostomy you have. Try to do some research. I don't understand why your friends would advise you not to be on this site. We are all here to help one another. Your doctor will answer your questions; you just need to be to the point. The reason I list mine on paper is so that I won't forget. Good luck.

My friends think that I shouldn't read the negative stories, but I want to be informed, good and bad. I want to feel fully informed. The negative stories do freak me out, but I'd rather know. The surgeons sound like it's going to be a piece of cake; at least that was what I felt in the hospital. I don't think it's going to be that easy. Everybody here says that the first few months are difficult; maybe a few people didn't. I'd rather be prepared, and I do wish my friends would be supportive. Thank you for the advice on writing it down.

Just wanting to reply to this post saying that I think it went well. I asked all the questions. I also found out that I have about 5 inches of colon left, which is a lot more than I thought I had. I thought I had like half an inch or next to nothing. I'm still struggling mentally, but now I feel more hopeful. I have tests at the end of the month to see if I'm absolutely eligible for a reversal.

Just an update to say that I was approved for reversal today. The testing was not fun, and I got water all over the place and I felt so nauseous taking the stuff for the scan. But everything went well, no leaking. I decided on my own that I'm going to wait until maybe September to make it one year since my operation because my immune system has still not recovered from the bacterial infection that took my colon or most of it (I found out that I have a soda can of a big colon left, about 5 inches). So I'm gonna wait a little longer. I'm really grateful for everybody's support and kindness, and somebody suggested the psyllium husks to me and that has been very helpful. If I take one a day, it doesn't do anything, one capsule, but if I take like four or five, it does something, and rice and bananas have been a big help along with potatoes. I have been getting better at firming up the output, and as I have told Iggy, I wasn't being patient enough with the silicone ring. I wasn't waiting for it to heat up. I wasn't doing a good job with the tape around the base plate and too much powder, so I was getting leaks and it was really, really getting in my head. But I have been able to control the leaking, and I'm learning how to handle the bag much better. I do want the reversal, but because of you guys and I guess because of the passage of time, keeping the bag wouldn't be the worst thing, and that's better than where I was because even last week I was feeling very sad. There are two people on here that have had direct, like the attachments of the colon to the rectum, that have spoken to me, and you guys know who you are, and you've been very helpful. I feel a lot better about all possibilities, and I owe a big debt of gratitude to you guys.